Taking it One Step At A Time

By Lynda Tse

In March 2006, Lynda Tse was leading a busy but normal life as a wife, mother and kindergarten teacher in Wellington, New Zealand. The sudden diagnosis of a cancerous brain tumour came completely out of the blue. Now, eighteen years later, Lynda is telling her story of what it is like to be a long-term survivor of a glioblastoma.
Note: Lynda’s husband Chris is a founding trustee and the current chair of Brain Tumour Support NZ.

Lynda first presented her story at the Brain Tumour Support NZ 2024 Patient and Caregiver Meeting in Wellington, New Zealand, on 8th June 2024.

The 5th March 2006 was a Sunday. It is the day when my life changed forever.

My husband Chris and I had invited relatives over for Sunday brunch. I had been experiencing bad headaches all morning as well as feeling a bit nauseas. I took one bite of brunch and went rushing to the bathroom to vomit it all up.

Chris took me to the After Hours clinic in Newtown. The doctor on duty told me to go home, take some paracetamol and contact my GP in the morning. He said that if we were in the US he would be sending me off for a brain scan.

The headaches, nausea and vomiting continued throughout the night. The next morning, we saw my GP who took one look at me and knew there was something seriously wrong. She sent me to A&E where I had a CT scan. When the results came back, the emergency doctor told me that the scan showed a lesion.

My new reality had begun.

On the 9th of March 2006, 3 days after being admitted to hospital, I had surgery to remove a brain tumour from my left parietal lobe. The pathology came back as a glioblastoma, or GBM, a grade 4 brain tumour.

I was faced with the daunting task of telling our children that I had cancer.

At the time, our daughter, Cassandra, was 13 and had just started high school and our son, Nathan, was 10 and in his last year of primary school. I said to them: “Yes, I have cancer, but I have had a great surgery and I will be getting radiation and chemotherapy treatment to keep any tricky cancer cells away.”

I could see that they were scared. Cassandra asked me if I was going to die. I replied to her “one day but not for a long time yet”. I didn’t want to lie to them, but at the same time I wasn’t prepared to accept my prognosis and start preparing them for my imminent demise.

This was partly because I felt so good. I no longer had headaches and I remember thinking that magically everything would work out. One of my mantra’s during this whole time has been: “accept the diagnosis but defy the prognosis”. We humans are all individuals, not statistics.

My oncologist laid out the treatment plan. Radiotherapy and oral chemotherapy called Temodal.

It’s the same treatment plan that people diagnosed with GBM receive today, but in 2006 Temodal was still very new and not funded by Pharmac so we would have to pay for it ourselves.

Chris and I had already decided we were going to fight this cancer and so I consented to the plan and my treatment began.

In Wellington at the time, there was a bubble of people with brain tumours, so many there was enough to form a weekly support group at the Cancer Society.

One of these people was Chris’s cousin, Michael. Mike had been diagnosed with a glioblastoma about a year before me. We became close allies, calling ourselves the “brain tumour warriors”.

We went to the support group meetings together, me with Chris and Mike with his mum, Anne. The meetings were good because we could all share our experiences and anything we had read about, any treatment that was new or different. I remember a man had had gamma knife radiation overseas. Some people were trying acupuncture.

This disease is a nasty beast and sometimes there would be sad news, tears and grief at the loss of someone from the group but also there were celebrations for clear scans.

Sadly, Michael succumbed to the disease in 2007, aged 40, having survived two years from his diagnosis. I will always remember his courage and how he gave me hope and courage too.

My 6 weeks of radiotherapy and daily Temodal was completed on 30th May 2006. The major symptom I experienced was fatigue. My headaches were not too bad.

I had begun taking a few supplements, such as Boswellia and Bromelain to help with any swelling and to stay off dexamethasone.

A few weeks after finishing radiotherapy I started on the next phase of my treatment plan, taking Temodal at a higher dose for 5 days every month for 6 months at a cost of $5,000 per month. The higher dose was more difficult to handle. Some days I suffered from extreme fatigue.

After my second cycle my platelet count dropped too low and I was forced to stop the Temodal for a few weeks. After my platelets came back up, I resumed the Temodal at a lower dose and remained on this dose for the remaining four cycles.

About half way through my treatment, Temodal became funded by Pharmac, which was a huge relief for us financially.

At the completion of my six months of Temodal I asked my oncologist “What next?” I felt as though doing nothing would just be waiting for the tumour to come back and I wanted to prevent this from happening.

Rather than continuing the Temodal at full strength, my oncologist suggested an experimental protocol of metronomic Temodal plus Celebrex. This involved taking a low daily dose of Temodal which would hopefully be less toxic on my platelets.

I did this for a further two years before stopping all treatment at the end of 2008, apart from a few key supplements such as Boswellia, Melatonin and Curcumin.

For many years I had been making peg dolls for school fairs and gifts for friends.

This hobby and creative pursuit really helped me in the early stages of my recovery.

Being in the creative zone meant my mind was kept occupied. I could just focus on creating and not dwell on my situation.

I branded my designer peg dolls “Peglets”.

A friend helped me create a website and I started selling a few pieces.

Then in 2007 the Royal NZ Ballet commissioned a limited edition Peglet for their new production of Cinderella. I designed a “Rose Ballerina” Peglet and made 50 pieces which were sold at the theatre before each show, along with other Cinderella themed merchandise.

It was so rewarding to see grandmothers buying the Peglets for their granddaughters. I was told that the choreographer bought one to take back to the UK and I later found out that my GP had bought one for her daughter, not realising that I had made them.

In 2008 I was well enough to go back to work, initially as a teacher’s aide at our children’s primary school, before resuming my kindergarten teaching career in 2009.

I was now on annual MRIs. My scans continued to be clear and I remained relatively symptom free, apart from the odd headache and hot flushes which my oncologist put down to symptoms of peri-menopause.

In February 2011, I completed the Wellington Round The Bays 7k fun run/walk to raise money for the Malaghan Institute.

A couple of months later, following another clear MRI, my oncologist told me I no longer needed to see him or have regular MRIs unless I experienced symptoms. I was discharged from the oncology clinic.

It had been 5 years since my diagnosis.

In the following 5 years my health was relatively stable. Life was full, the children were thriving at school and university, and we even managed some overseas travel.

Physically I was feeling fine, although I was having some ongoing issues with my balance.

Prior to my brain tumour I used to enjoy riding my bike. However gradually I found myself cycling less and less, and one day I discovered that I was not able to balance properly on the bike at all.

I didn’t think much of it and continued to enjoy other forms of exercise, long walks around the Eastern bays or through the trails of Mount Victoria, and weekly pilates classes.

In 2016, I did Round The Bays again. However a couple of months later I tripped and fell down a flight of stairs.

Since that fall I have found going down steep stairs a problem. I also started to notice a few problems with my balance.

Towards the end of 2016, I was diagnosed with stage 2 endometrial cancer and underwent a radical hysterectomy, followed by a course of brachytherapy.

As it was my second cancer, the tumour tissue was sent for genetic testing and I was subsequently diagnosed with Lynch syndrome, a hereditary condition which increases your chances of developing certain cancers.

People with Lynch syndrome have a 50% chance of passing it down to their offspring.

Having survived my glioblastoma for 10 years I was less concerned about the endometrial cancer, however the thought of passing Lynch syndrome down to my children was very distressing.

Over the next 4 years I remained cancer free. I felt well, but I was continuing to have issues with my balance and was still having difficulty with stairs and escalators.

In particular I noticed I couldn’t stand up in a gusty Wellington wind. If the wind was too strong it would knock me off balance and I struggled to stay upright. I needed to hold on to something and wait until the gust had passed.

Towards the end of 2020, I participated in a fundraising walk for Brain Tumour Support NZ in Palmerston North. The walk was 7 km long but I could only manage 5 before my legs felt weak and I had to stop. On the trip back to Wellington, I started to experience double vision. I was referred to an ophthalmologist and a neurologist.

An MRI and other tests ruled out a recurrence of my brain tumour but, the scan showed evidence of microbleeds. My neurologist said these were almost certainly caused by the radiation treatment I had in 2006.

At a Neurology Audit Meeting at Wellington Hospital I was diagnosed with gait dyspraxia and referred to a physiotherapist, who was able to help me with my balance and walking.

These days I use a walking pole when I leave the house. I sometimes feel sad about my mobility or lack of it, but I still manage to get out and about.

I am thankful for everyone who has supported and looked after me along the way.

I always hoped I would survive to watch my kids grow up. To see them achieve their goals and find their life partners.

To me, there’s no such thing as false hope.